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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Symptoms >> Human Barometer http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1308857212 Message started by texan1960 on 06/23/11 at 08:26:52

Title: Human Barometer
Post by texan1960 on 06/23/11 at 08:26:52

Does anyone else feel like they are a human barometer? With every storm that blows in, I just get so achy all over (flu like ache) and the neurological symptoms flare up (dizzy feeling, fasticulations, muscle spasms). This is on my usual antihistamines (zyrtec, zantac) and lyrica...errrg! Maybe I need to try adding back the singulair? I feel like that old lady whose hip could forecast the weather >:(

Title: Re: Human Barometer
Post by Riverwn on 06/23/11 at 09:02:03

Join the club! LOL I think those of us who have bone pain do feel temperature and barometric changes much easier--and it causes more pain.

I think youre right , I would add your Singulair back again. Remember that Singulair is the only med that blocks luekotrienes so its necessary if that is part of the mediators you are reacting to.

I would also add one more antihistamine whenever you feel pain, it makes your pain med work even better to hit at the cause while knocking down the pain. Hope you feel better soon :)
Hugs
Ramona

Title: Re: Human Barometer
Post by nelson1600 on 06/24/11 at 05:35:21

Texan,

I fully agree with you; although I have not experienced bone pain on a regular basis I still get flare ups... I live just north of Dallas and earlier this week we were "BLESSED" with 2 1/2 inches of rain over a 2 day period... Where we needed the rain I sure did not need the effects of the storms; as they were the worst few days of the week for me.

We live in a suburb and with our HOA we have access to a nice private (resident only) pool. Tuesday my kids wanted to go swimming and they know if I'm taking them that they have to wait until the temperatures cool off. Well, Tuesday evening (around 7) it was overcast and the temperatures outside had dropped off; for me, I thought this is the perfect time. So we hopped in the car and drove to the pool. No sooner did I step in the water I had hives all over my legs and back and was flushing from head to toe. Fortunately there was only one other family at the pool because I get embarrassed when this happens (I feel like people think I'm polluting the water when they look at me during a reaction).

Fortunately my wife was there so I got out of the pool (she saw what was going on); and I dried off, reached in her purse and grabbed my zyrtec and a bottle of water. I sat in the shade for about 30 minutes feeling miserable; but trying not to completely spoil the kids evening; finally after 30 minutes I decided we had to come on home.

It stinks because the skin reactions are just part of it; then you have to deal with the stomach pain, diarrhea, nausea, and that night I ended up throwing up 3 or 4 times in a row... But what do you do? I'm sure everyone on the site tries to be as normal as possible; and my kids are so sweet. Any other young ones would have been upset if after only 30 minutes they had to get out of the pool; but my 6 year old was quick to tell her younger sister that we had to get home so daddy could feel better... :)

Ramona is so right about the Singulair; I just recently added that back into my regiment and it has helped; I guess though that there are always going to be situations we can't anticipate.

I hope you are feeling better today.

~Lucas

Title: Re: Human Barometer
Post by texan1960 on 06/24/11 at 06:49:45

Awww, your story just about made me cry! It can be frustrating. But, enjoy those kids while you can...mine turned 18 today :). I don't usually get hives, but every storm makes my body just go crazy. I live in east Tennessee ....we get over 50 inches of rain a year, soooo you get the picture. I am from Texas, so know all about how sultry it can get there too. I do flush and become dizzy feeling sometims in the heat. I used to hike in the mountains here alot (16-20 miles in a day) ...now, i just enjoy them by driving around in them. But, I am lucky to live in a beautiful place! I guess I will ask the immuno or my urologist about singuilar again. It gave me some fierce heartburn, but maybe on prilosec I can tolerate it. I also have ordered the histame, so maybe it will help too...Good luck and we can hang in until summer is over!!!

Title: Re: Human Barometer
Post by nelson1600 on 06/24/11 at 07:15:28

Here Here; to Summer being over :) -- I'm so jealous of Lisa as I understand Brazil is still experiencing their cooler time of the year...

Out of curiosity; where in TN do you reign? I'm not an expert on the geography of the state; but in a previous life I had a lot of customers from Chattanooga all the way to Memphis and saw what I consider to be some of the most beautiful parts of this country (Oregon and Utah are up there on my list too); traveling in that area... If I live to be 100 I will never forget my first trip to Ruby Falls.

Anyway I am happy to see your response and hope that means you are feeling better today. On a side note, I don't know what I'm going to do when my girls get older. My oldest is 10; but by technicality she is my step daughter (I hate the word step because I've been around since she was 16 months old); but that does mean that I have to share her; so she is currently with her Dad for the first part of her summer break. I can't begin to think about how if the first 8 1/2 years (Time I have been around) went by so fast what I will do when she turns 18...

But I do want to wish a HAPPY BIRTHDAY to yours and congratulations :)

Title: Re: Human Barometer
Post by texan1960 on 06/24/11 at 07:30:19

I live in Knoxville, so pretty much the same landscape as Chattanooga. I am a little better today! Haha, until the next storm blows in. I would love to be in Colorado or Maine right now. Well, don't think about the future, just have as much fun with them now as you can...the teenage years, well that's another story, but they actually emerge as full grown human beings on the other side. I have a girl who has had to grow up with a chronically ill parent, but she turned out to be a great girl and we have had lots of fun despite it all.

Title: Re: Human Barometer
Post by Lisa on 06/26/11 at 14:20:46

Wait a minute you guys, I've EARNED this break from the heat!! Our temps here are on average about 95 degrees from the end of December until Mid March! From mid November until Mid May our temperatures do not drop below 85 degrees unless a "cold front" comes through and then it may go into the upper 70s! I have learned to live INDOORS by battening the hatches from 9AM until about 5PM when the winds blow and give us a breather from the high heat. We get almost daily thunderstorms which will rip through and drop our temps by about 20 degrees, but that's not always the deal. I live in an area with lower humidity than if I were at sea level, but we get humid days too. We had a REALLY hot summer this year when we had almost a full month with no rain. Our temps got as high as 110 in the shade! It was awful and I was triggering all over the place!! And I had to put up with you guys complaining about the snow and cold! Ugh! Oh, how I'd have loved right then to hop a plane and enjoy just a week of that snow!!

Yet, I'm convinced that we Masto patients are really in need of making some real changes in our lives. I think we need to hijack Ireland so that we can have a climate which doesn't drop way too low, but also doesn't get too high. I wish Brazil had year round winter weather for it would definitely be IDEAL for us masto patients, but that's the trick, to get this kind of weather YEAR ROUND!! Not an easy thing to find!

Hugs!

Lisa

sorry to hear of your trouble Lucus! Sounds to me that you have cold urticaria on top of your regular masto problem for that going into the water and triggering with the water is a sign of cold urticaria. Premedicate man!! Take extra doses BEFORE you get into the water and see if this helps for if the water is too cool, that too will trigger you. Crazy, huh?!

Title: Re: Human Barometer
Post by nelson1600 on 06/27/11 at 01:23:13

Lisa you are so great! Thank you for your advice and concern...

I have a cousin who has a close friend with family in Brazil (although I don't know the name of the city where they live); I know that once every two years they do a big trip and she travels with her friend and stays for about 2 weeks... I know your summers have to be HOT and HUMID; but I've seen pictures and what a BEAUTIFUL country! It is on my places to visit before I go :) (I just wish for your sake it was cooler YEAR ROUND)...

On a completely opposite note; (I think I've seen others post similar questions) -- does anyone else often feel pressure in their throat around the top of their chest / bottom of the neck? I'm starting to be able to figure out if/when I'm going to throw up based on this feeling. Pressure is the best word I can use to describe it... It's often accompanied by stomach pain / discomfort; but never heart burn or indigestion. Yesterday was an ok day; not too many issues; but then last night the pressure kicked in and of course I ended up sick at my stomach a couple of times before bed... Just curious if anyone else experiences this.

~Lucas

Lisa; if it gets too hot during the summer months in Brazil; you always have a place to hang out in the states.... You and Ramona have become regular names around my house :) and you and yours always have a place to stay if you ever find yourselves in this neck of the woods ;)

Title: Re: Human Barometer
Post by Riverwn on 06/27/11 at 04:40:06

Hi Lucas!
Im sorry to hear you are feeling so bad.. I can relate. I answered you on this on your other post too but one question.. how much Zantac are you taking?? Remember 300 mg, twice a day is what most of us need and are on. Do you have a prescription for promethezine?? (Phenergan). I take it whenever I feel nauseaous--which is about 3 times a day right now.I think the summers heat is exagerating our symptoms--even though I stay out of it.

Remember to eat slowly, just the act of it will activate mast cells. Theres still not something right with your meds--maybe try a 3rd mid day dose for awhile??
Heres hoping you feel better soon!
hugs
Ramona

Title: Re: Human Barometer
Post by nelson1600 on 06/27/11 at 04:46:27

Lol, my timing is out of sync... I just responded to your other post as well... :)

I'm taking as much as 900 - 1200mg of Zantac throughout the day; sometimes as many as 6 Zyrtec; Singulair twice a day (morning and pm); xyxal only in the PM (makes me drowsy); and I have started taking a mid day dose of benadryl with a warm beverage -- alas (still reacting)

On the other hand; my DR did call me back last week with the go ahead for Gastrocrom; I'm just waiting on some funds to hit the old bank so I can go pay for it (Expensive this medicine is; "Yoda").

Thank you again for your responses and concern and remember if you ever find yourself in North Texas; you have a place to stay :)

~Lucas

Title: Re: Human Barometer
Post by nelson1600 on 06/27/11 at 04:53:29

I forgot to answer your question :(

I do not have a prescription for promethezine; but I will read up on it and share my findings with my Dr. -- I'm starting to become overwhelmed with all the meds -- I remember reading so much when I found the old forum about the number of meds so many people take and thinking HOW... But over the last year I have started to understand the necessity of so many medicines that I now don't know what I would do without them.

~Lucas

Title: Re: Human Barometer
Post by Riverwn on 06/27/11 at 05:27:01

Youre exactly right. Before I got sick, I took 1 pill a day for blood pressure. Now I take about 26 a day divided into 2 doses am and pm including my nausea pills, pain pills, 2 eye drops, nasal spray, gastrocrom , 2 blood pressure pills (one twice a day) and insulin twice a day... whewww.. sometimes I feel like "Didnt I just do this?" LOL Remember that our bodies need and tolerate more antihistamines than people who do not have mast cell disorders.

When I am feeling bad, I add a third dose during the middle of the day, til I stop reacting.

I have a med box and set my meds for a 2 weeks at a time, its so much easier. I will say, I have forgot to take my pills a few times--and all hell broke loose... so I make sure I dont forget now :)

I think adding the benadryl was a great idea. You might also try Vistaril or chlortrimeton--ask your DR.

Have a safe and good day!!
Ramona

Title: Re: Human Barometer
Post by Riverwn on 06/27/11 at 05:28:11

PS Thank you for the kind offer... I cant travel anymore but I would have loved to before!
Hugs
Ramona

Title: Re: Human Barometer
Post by Lisa on 06/27/11 at 06:14:28

What a nice invitation!! I'D LOVE TO VISIT!!! Perhaps someday I'll be able to save up for it, Lucas! I don't know when I'll be back in the States anytime in the near future, but really appreciate the invitation!! Very special! Thank you!

The invitation to Brazil is ALWAYS OPEN!!!! However, make sure you plan for anytime between late April to early October and we'll all have a nice time then! hehe!

Lisa

Title: Re: Human Barometer
Post by Riverwn on 06/27/11 at 06:33:19

clicking my heels together 3 times and saying, I wish I could see Lisa in Brazil LOL... ah well maybe sometime when you come back...Im lucky just to have you as my friend!
love ya
Ramona

Title: Re: Human Barometer
Post by Lisa on 06/30/11 at 01:01:32

Ah, Mona, you are in my heart dear!!! :-*

I am wishing you all cooler breezes though!!

Hey, a great trick you can try to keep cool - WET T-SHIRTS!! There are days when it just gets SOOOO hot that nothing seems to work. On those days, since during the summer I get to play housewife, I take a t-shirt and wet it down and then give it a good wringing. Then I wear that around the house! It get's old wearing this wet thing next to my skin all day long, but boy does it do the trick of keeping my body core temperature down!!! There are times I'll actually begin feeling COLD!!!

And on those nights when it's also really hot, especially if you don't have any AC, take a towel, wet it, wring it good and then drape it over you in your bed. Make sure the fan is directly on you, for otherwise you'll begin to feel hot and wet instead of cool and comfortable. It will do the trick, until the water is evaporated from the towel and you've got to do it all over again.

This is Lisazilla's method of keeping cool in the 100+ temps!!! :)

Title: Re: Human Barometer
Post by texan1960 on 06/30/11 at 02:52:39

Good news sort of....my allergist sent me a letter that I was overdue for an appointment and so I made one and will ask about getting back on singulair. I am taking multiple Zyrtec a day +allergy shots and still have horrible sinusitis plus body pain, so maybe this will help...Lurvin me some summer!

Title: Re: Human Barometer
Post by Lisa on 06/30/11 at 12:08:50

Great News!!! Singulair ROCKS!!! At least for me!

[smiley=2vrolijk_08.gif]

Title: Re: Human Barometer
Post by Riverwn on 06/30/11 at 16:42:18

I love it too, I just need more than 1 a day. Need to see the new DR for a better regime :)

Title: Re: Human Barometer
Post by Lisa on 07/01/11 at 13:39:31

Hang on tight, Mona, You'll get there, I'm certain of it!!!

:-*

Title: Re: Human Barometer
Post by Riverwn on 07/02/11 at 03:19:22

I sure am hoping so! Im hanging on LOL
love you
me

Title: Re: Human Barometer
Post by r123 on 07/13/11 at 15:36:54

Texan... I know exactly what you mean, I've noticed lately every time I start not to feel well (I'm lucky enough to have most days be good days!) in the next day or so there's a horrible storm.

I usually just tough it out, I figure if I ignore not feeling well it will go away (obviously that tactic is less then successful, but I'm usually too busy to notice it anyways)

best of luck! hope you feel better.

Title: Re: Human Barometer
Post by texan1960 on 08/09/11 at 06:17:30

Yes, I have decided they need to fire all those pricey meteorologists and just hire people with mast cell disorders to forecast the weather!

Title: Re: Human Barometer
Post by Riverwn on 08/09/11 at 06:34:37

LOL cute texan!! I love laughing at the poor weather people. I remember when a new guy started in Gainesville Florida--there were bad thunderstorms coming in and he was telling us all to go to our basement if we saw a tornado LOL--I was thinking "Thats sea level here and called a swimming pool!" LOL.. I dont think he ever lived that one down.
:D ;D ;D ;D ;)
Ramona